"Suffering the Slings and Arrows of Outrageous Fortune"

So… another installment of Em and Beth’s excellent adventures. (Doesn’t quite have the same ring as “Bill and Ted’s” but whatever…)

New Meds

Since I last posted, Em has had to go off the Cymbalta. She has been on several meds that, combined, can cause Serotonin Syndrome, and Cymbalta was one more to add to that list. When she displayed confusion, lethargy, and worsening muscle twitching, we got concerned. The doctor wasn’t – but I was and so I called the pharmacy. The guy I talked to spent a fair amount of time on the phone with me and finally said if it was his kid, she would not take the new med anymore. Which sealed the deal for me. Nucynta is another one that can be a problem, but in a much lesser way than the Cymbalta, so we are hopeful that she can perhaps try it once the Cymbalta is out of her system and maybe it will help. Again, it is a thing that it was helping her pain (although she didn’t actually notice much relief when she had taken it, but rather when it wore off) but she just can’t tolerate it. That gets heartbreaking, to be honest.

I actually haven’t talked to the pain doc about stopping the med – we made an “executive decision” to stop it. He wasn’t a bit concerned when I talked to him about the worrisome symptoms, which is rather concerning to me, if I am honest. I know he is just trying his best to help and sometimes we have to take calculated risks. This just is not one that worked out.

Because he sort of blew off my concerns, I am hesitant to call back and tell him that we decided it best to take her off the med. I don’t think it will be a problem but I just haven’t had the time or inclination to jump back into that fight, for reasons that will be apparent in a moment.

Another Trip to the ER

We are thinking that Em has developed a CSF leak and made a trip to the ER yesterday at the advice of the neurologist. Or, more accurately, the nurses at the neurology office because they didn’t get around to returning my second call until the end of the day when they couldn’t get a hold of the doctors.

It was Dr. Diana that suggested the possibility of a leak – that perhaps the weirdness with her ear was due to a leak. (Thank God for Dr. D, I don’t know where we would be without her.) Now, all of these new and worrisome symptoms were sort of mashed up together, but after she stopped the Cymbalta on Tuesday, she started complaining of a headache that went away when she laid down and quickly got horrible when she is upright. So, she had already been in bed for a few days because the Cymbalta knocked her out. But, starting Monday or Tuesday, every time she sat up, the headache was awful and when she lays down it goes away. So, that seems like a low pressure headache and/ or a leak. Who knows how long it would have taken me to figure it out without a helpful word from Dr. D?

Diamox made it worse, so we pulled back on it and let her miss a dose to see what happened. Her head got a little better, but still, she couldn’t be upright. And, there was the concern of meningitis. So, I called the office late on Wednesday, called back on Thursday when I didn’t hear back and they finally got back to me and they said to go on to the ER.

You can imagine that this was not well received after our last trip to the ER. Understandably, we were both anxious about how it would go.

Fortunately, this trip was much better. They took her pain and symptoms seriously and treated her well. They started an IV, ran some fluids and gave her some pain medication. It took the edge off of her headache and let her rest a little. They did a CT scan, which found no big leaks, but could not rule out a small leak. They could not do the test to check for a leak at that time of night. I am not sure what he was referring to there, but we will follow up with the neurologist and pursue it further.

He said there was no indication that she has meningitis but the only way to tell for sure would be to do a spinal tap. He did not recommend it and we all agreed. Wholeheartedly. And, he clearly didn’t feel a lumbar puncture was necessary which I was also in wholehearted agreement with.

He felt comfortable sending her home to sleep in her own bed and just follow up with the doctor, saying we can come back if it gets worse. I had packed to stay a few days if necessary (the last time we had a real emergency I didn’t and we ended up staying several days at Riley Children’s after a swift ambulance ride in the middle of the night and an appendectomy) and I was pretty darn glad it was unnecessary! If packing to stay is all it takes to get sent on home, I will do it every time from now on out!

This morning, her head is no better when she is upright. So, I think we are dealing with a low pressure headache. She took a small dose of Diamox yesterday afternoon before we went to the ER, but that is all she has had since Wednesday. She can make the call as to whether she needs it or not. And, we will play it by ear until we can get in to see neurology. I am also hoping that when we see the ENT, he might be able to help us figure out if her ear has anything at all to do with her headache. If it is a leak, with any luck it will heal itself and need no further treatment.

It is more than a little frustrating to have to work so hard to get answers – we spent hours in the ER and came away with no answers. And, yet, I am thankful that it was a positive experience, that they took her pain seriously and treated it, that they were caring and compassionate, and that we were able to rule the big stuff out. Of course, that leaves all the little stuff up for grabs, but that is our life.

When the doctor first examined her, he said he was going to go read her records and see if they could give him more insight into what was going on. When he came back in, a couple hours later, after the pain meds and CT scan, he sat down and said that he had been reading about Em and that it was enough to keep him busy for awhile.

How right he is! Having been kept busy for the last 6 years, I can tell you that truer words were never spoken.

Comments on: "Never a dull moment…" (2)

Just a thought for others who may be watching — spontaneous spinal leaks are more common in connective tissue disorders and high pressure can increase the risk of spontaneous leaks. Leaks from our ears and nose are fairly benign, and usually self-heal when the pressure is reduced. Spinal leaks are the painful ones. If high intracranial pressure is a contributing cause of a spinal leak, the patient will usually need to jump back on Diamox after the leak is repaired (or risk reopening the leak, or sprouting new ones). This can be easy to forget, but I know you guys will stay vigilant. *Hopefully*, Em will be able to reduce or even go off of Diamox someday… Fingers and toes crossed for you, Em. xxoo

Thanks Dr. D! I keep telling Em that she can take her Diamox if she needs but she is adamant that this is different that her normal high pressure headache, so I will defer to her. Her headache is about a 4 when she is laying down (apparently that qualifies as “going away” to her) and an 8 or 9 when she sits up.

I am waiting to schedule a follow up appointment with neurology. They need the ER report before they will schedule it and they don’t have it yet. It seems like all I do is what to schedule appointments! I am sure Brian will be fine with her staying on the Diamox once this is settled. If we get sent to a different neurologist, well, we will cross that bridge when we get to it. Hopefully that doesn’t happen.

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